Celiac Disease Foundation » Advocatehttps://celiac.org
Fri, 31 Jul 2015 23:07:51 +0000en-UShourly1http://wordpress.org/?v=4.2.2CDF Attends Precision Medicine Working Group Meeting in Washington D.C.https://celiac.org/blog/2015/07/20/cdf-attends-precision-medicine-working-group-meeting-in-washington-d-c/
https://celiac.org/blog/2015/07/20/cdf-attends-precision-medicine-working-group-meeting-in-washington-d-c/#commentsMon, 20 Jul 2015 21:30:54 +0000http://celiac.org/?p=17367CDF is committed to advancing the delivery of personalized health solutions emerging from the rapidly developing fields of genomics and data collection and analysis. We are a lead institutional participant in the Community Engaged Network for All (CENA), a ground-breaking initiative to create a massive national patient-driven cohort for disease research. The White House has launched a similar initiative that includes the FDA and NIH, called the Precision Medicine Initiative (PMI).

Our interest is straightforward: celiac disease is an autoimmune disorder that impacts millions of Americans in a myriad of ways, including co-morbidities with numerous other diseases. To date, there are no approved treatments for celiac disease other than strict adherence to a gluten-free diet. We now have evidence that for many celiac sufferers, even strict adherence isn’t sufficient to eliminate the damage from the disease. Both CENA and PMI, if realized as currently envisioned, hold the promise to deliver effective, customized treatments for individuals with celiac disease and its assorted symptoms.

On July 1-2, 2015, the Precision Medicine Initiative (PMI) Working Group of the Advisory Committee to the NIH Director (ACD) held a public workshop on participant engagement and health equity as they relate to the proposed PMI national research cohort. The workshop focused on the design of an inclusive cohort, building and sustaining public trust, direct-from-participant data provision, and effective and active participant engagement characteristics of a national research cohort of one million or more volunteers.

There is uncertainty as to whether one million participants is enough for the PMI cohort to generate actionable data, especially for the “small” diseases.

Privacy of patient information is of paramount concern to potential cohort participants. This includes data collected from mobile platforms.

How will patient advocacy groups like CDF be deployed to help recruit cohort participants?

Individuals surveyed about the cohort indicate that their primary reason for wanting to participate is getting more information about their personal health and potential health outcomes (82%). Also high on their list is a desire to be directed from the cohort into research studies. Of less importance is the knowledge that they are contributing to overall biomedical research.

How can traditionally underrepresented groups in medical research, particularly women and minorities, be encouraged to join the cohort?

Research from a broad-based cohort could help explain environmental factors, even to the neighborhood level, that impact disease and disease severity. For example, is there an existential reason why the prevalence of celiac disease is doubling every 15 years, and that the fastest growing group of diagnosed celiac patients is women over the age of 40?

The younger you are and the more education you have, the more likely you are to agree to participate in the cohort.

]]>https://celiac.org/blog/2015/07/20/cdf-attends-precision-medicine-working-group-meeting-in-washington-d-c/feed/0Celiac Disease Foundation Chief Executive Officer Appointed to Royal Caribbean Advisory Board on Disabilitieshttps://celiac.org/blog/2015/07/10/celiac-disease-foundation-chief-executive-officer-appointed-to-royal-caribbean-advisory-board-on-disabilities/
https://celiac.org/blog/2015/07/10/celiac-disease-foundation-chief-executive-officer-appointed-to-royal-caribbean-advisory-board-on-disabilities/#commentsSat, 11 Jul 2015 00:15:30 +0000http://celiac.org/?p=17171July 10, 2015 – Los Angeles, CA – Celiac Disease Foundation Chief Executive Officer, Marilyn G. Geller, was recently appointed to sit on the Royal Caribbean Advisory Board on Disabilities. The Advisory Board held its first meeting in May 2015, and was established by the cruise line to improve the travel experience for guests with disabilities, to obtain feedback on the existing guest programs and services, and to highlight the company’s accessible travel programs. Among the remaining Advisory Board Members with whom Marilyn serves include: representatives from American Association of Kidney Patients, American Sleep Apnea Association, Christopher & Dana Reeve Foundation, Food Allergy Research & Education, Hearing Loss Association of America, United Spinal Association, and representatives from several other national advocacy organizations.

“I am honored to have been selected to sit on the Royal Caribbean Advisory Board on Disabilities, as it is a cause for which I am deeply passionate,” stated Marilyn. “This position will provide an additional avenue to raise awareness for celiac disease and to pursue CDF’s advocacy efforts to have the voice of the gluten-free community heard.”

The purpose of the first meeting of the Royal Caribbean Advisory Board on Disabilities was to provide an overview of Royal Caribbean’s Access Department and its responsibility to ensure compliance with the Americans with Disabilities Act. Royal Caribbean’s accessibility program provides accessible stateroom features, special accommodations for those with hearing and visual disabilities, as well as specific dietary and medical needs, and more. To learn more about Royal Caribbean’s accessibility programs, please click here.

]]>https://celiac.org/blog/2015/07/10/celiac-disease-foundation-chief-executive-officer-appointed-to-royal-caribbean-advisory-board-on-disabilities/feed/0CDF Attends FDA Patient-Focused Drug Development Workshop in Washington, D.C.https://celiac.org/blog/2015/05/22/cdf-attends-fda-patient-focused-drug-development-workshop-in-washington-d-c/
https://celiac.org/blog/2015/05/22/cdf-attends-fda-patient-focused-drug-development-workshop-in-washington-d-c/#commentsSat, 23 May 2015 01:03:36 +0000http://celiac.org/?p=16019On May 11, 2015, CDF CEO Marilyn G. Geller was proud to represent the celiac community at the public meeting of the U.S. Food and Drug Administration Functional GI Patient-Focused Drug Development Conference (PFDD) at FDA headquarters just outside of Washington, D.C. There are two issues we want to highlight about CDF’s presence at this important conference:

Celiac disease does not fall under the functional GI category, which includes diseases like irritable bowel syndrome. Individuals who suffer from functional GI diseases, which impact as many as one in four Americans, may have symptoms similar to celiac disease, but no correlated structural abnormalities in the GI system. As you know, gluten exposure for celiac sufferers causes a structural abnormality – flattened villi – that can be identified through serology and biopsy. Nonetheless, because celiac disease symptoms overlap with functional GI symptoms, CDF was invited to present at the conference.

The PFDD process, in which the FDA is now engaged across a number of diseases, is incredibly important to the patient community. This process helps the FDA understand first-hand, independent of the opinions of their staff and the pharmaceutical companies, what types of treatments patients desire to improve their quality of life, especially if the disease is chronic, as celiac disease is. As you can imagine, the symptoms from which a patient might want relief may differ from those for which a pharmaceutical company wants to develop a treatment. Similarly, what a patient might consider a successful treatment may be different from what the FDA or a pharmaceutical company might think to measure. The FDA is being directed by legislation to set benchmarks and endpoints for therapies that reflect patient needs when approving treatments.

CDF’s written submission to the FDA included the results of the community survey we conducted online using the FDA-developed survey questions. The response to the survey, totaling more than 1,200 in just a couple of days, was overwhelming. We learned important details about delay in diagnosis, the serious and often debilitating consequences of exposure to gluten, the breadth of symptoms endured, and even how many of you have missed school and work as a result of the disease. For a more detailed discussion of the results, please click here. Again, we thank you for your participation; the FDA analysts are pleased to have some important information to digest.

Marilyn’s oral testimony at the meeting focused on the impact undiagnosed celiac disease had on her son and her family, the widespread and persistent ignorance in the medical community about the disease, and the probability that a significant minority of those who believe they suffer from a functional GI actually have celiac disease, and can be helped if they were tested for the disease. Her concerns expressed on behalf of the celiac community were well-received.

If you would like to learn more about the public meeting, the FDA has posted a full recording on its website. If you would like to submit your comments to the FDA – and we encourage everyone to do so – you can here. Finally, if you have any questions or comments, you are invited to contact us here.

While celiac disease is not known as a Functional GI disorder, Celiac Disease Foundation was requested by the FDA to provide commentary about the impact of celiac disease on patients’ daily lives, the types of treatment benefit that matter most to patients, and patients’ perspectives on the adequacy of the available therapies. The commentary below was provided on behalf of the celiac patient population in advance of the public meeting.

Patient-Focused Drug Development Comment Summary

To more comprehensively reflect the patient perspective in anticipation of the Functional GI Disorders public meeting, Celiac Disease Foundation posed the topic questions to our community via an online survey. We received over 1,000 completed surveys in under one week. Clearly, our respondents will be among the more engaged and proactive of the population diagnosed with celiac disease. From our survey, we learned the following:

90 percent of the respondents were female. More than 93% were adults. 90 percent of the respondents reported being diagnosed with celiac disease by a health care provider. In a 2013 study of adult celiac disease presented at a University in Naples, Italy, the ratio of women to men was 3.33.[1]

45 percent of survey participants reported it took five years or more after symptoms presented to receive their diagnosis of celiac disease. Only 21% were diagnosed in the first year.

21 different symptoms were reported by our respondents as having a significant impact on their life. Half cited abdominal pain, and slightly less than that cited fatigue. Chronic diarrhea and bloating ranked high, as did brain fog for more than 27% and depression or anxiety for more than 25%.

Even though 85% report that their symptoms have improved since adopting a gluten-free diet, 54% report that there are specific activities that are important to them that they cannot do because of the disease.

It is clear that the anxiety about accidental gluten exposure outside the home is the single most constraining factor about living with the disease. More than 80% feel limited eating outside the house, and more than 56% find travel difficult.

More than 60% report that the high cost of gluten-free foods is a financial burden.

Almost 70% report that symptoms last three days or longer after exposure to gluten. More than 8% report that symptoms last 14 days or more.

40 percent report missing school/work days due to symptoms.

When asked what worries them most about celiac disease, 68% are concerned that celiac will cause other health problems (research has established links to small bowel malignancy, especially lymphoma and bone health[2], and comorbidity with numerous other autoimmune diseases are documented[3]); 63% are concerned about the impact of celiac disease on their long-term health.

Our community lives in fear of accidental exposure to gluten, especially outside of the home in environments they do not or cannot control. There is also the possibility of accidental ingestion of gluten from poorly labeled or mislabeled products. And based on their reporting, their fear is well-justified given that, for the overwhelming majority, symptoms from exposure last more than three days. Therapies that can treat accidental exposure are a high priority.

Children were not well-represented in our survey and they present a different set of treatment challenges that may be addressed by drug therapy. There is evidence that strict adherence to a gluten-free diet is more difficult for children, and that adherence may decline as children get older.[4][5]

Chief Executive Officer, Marilyn G. Geller will be attending the FDA public meeting to present the Celiac Disease Foundation findings on behalf of the celiac patient population.

Celiac Disease Foundation Chief Executive Officer, Marilyn Geller, will present at the US Food and Drug Administration’s Patient-Focused Drug Development Conference (PFDD) on May 11, 2015 just outside of Washington, D.C. Marilyn accepted the invitation to speak on behalf of celiac patients and their caregivers. In anticipation of this meeting, we are asking that members of the celiac community complete the linked survey about living with celiac disease as soon as possible. We want to make sure that your voice is heard by the FDA as they make decisions on proposed therapeutic treatments for celiac disease. This is an urgent request, as our written comments are due to the FDA in a few days. Please complete the survey now.

As you are likely aware, the FDA drug approval process is the most rigorous in the world. Until the passage of the 2012 Food & Drug Administration Safety and Innovation Act (FDASIA), a glaring oversight in the process was patient and caregiver input. With the creation of PFDD, that is now changing. The FDA has authorized PFDD for disease areas that meet the following criteria:

Chronic, symptomatic, or affects functioning and activities of daily living

Aspects of the disease are not formally captured in clinical trials

Currently no therapies, very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives

Has a severe impact on identifiable sub-populations (such as children or the elderly)

Clearly, celiac disease meets each of these criteria.

What the FDA has learned from the limited application of PFDD over the last couple of years is the following:

Patients with chronic serious disease are experts on what it is like to live with their condition

Patients’ “chief complaints” may not be factored explicitly into drug development plans, including measures of drug benefit planned in trials

Patients want to be as active as possible in the work to develop and evaluate new treatments

In other words, researchers and clinicians may have ideas about what symptoms and underlying factors proposed therapies should target, but those who are actually living with the disease have opinions too, and they should be considered.

With your help, CDF is making its presence felt in Washington this year. This will be Marilyn’s third visit to the FDA over a two-month window on behalf of the celiac community. The first was the GREAT3 conference in March. The second is a meeting this week with Dr. Susan Mayne, Director, Center for Food Safety and Applied Nutrition (CFSAN), U.S. Food and Drug Administration. What this tells us is that, thanks in part to persistent, hard work by CDF and its ally organizations in the celiac community, there is real momentum building in drug research toward the introduction of meaningful treatments for celiac disease. The FDA is getting prepared to review applications for therapies at all relevant steps along the development pipeline and we – you and I – are being invited to have our voices heard. That is why I urge you to complete the survey now.

Thank you,

Talia Hassid, Celiac Disease Foundation Community Coordinator

]]>https://celiac.org/blog/2015/04/13/cdf-attends-fda-patient-focused-drug-development-meeting-washington-d-c/feed/0Celiac Disease Foundation Attends The State of Autoimmune Disease: A National Summithttps://celiac.org/blog/2015/04/09/celiac-disease-foundation-attends-state-autoimmune-disease-national-summit/
https://celiac.org/blog/2015/04/09/celiac-disease-foundation-attends-state-autoimmune-disease-national-summit/#commentsThu, 09 Apr 2015 20:17:54 +0000http://celiac.org/?p=15518It is estimated that autoimmune diseases affect somewhere between 20-50 million Americans. An autoimmune disorder occurs when your antibodies attack healthy tissue by mistake. Some of the better-known autoimmune disorders include type 1 diabetes, multiple sclerosis, lupus, Crohn’s disease, colitis and rheumatoid arthritis. Celiac disease, although not as well-known, is also an autoimmune disorder that affects an estimated three million Americans, which is more than the number of patients with type 1 diabetes and Rheumatoid Arthritis combined. Furthermore, more children have celiac disease than those with cystic fibrosis, Crohn’s, and colitis.

On March 23, 2015, Celiac Disease Foundation Chief Executive Officer, Marilyn Geller, attended The State of Autoimmune Disease: A National Summit at the National Press Club in Washington, D.C. The Summit explored the current trends in diagnosis, treatment, and therapies, presented by experts in research, environment, advocacy, and patient issues. Following this Summit, Marilyn also represented CDF at the Congressional Briefing on Specialty Medicines: Access and Safety, which took place on March 24, 2015. Here, experts discussed top autoimmune issues, including, access to specialty medicines and biologics/biosimilars.

It is important that the celiac community be a vital part of the larger autoimmune community for two key reasons:

We know from research that autoimmune diseases frequently appear in patients in clusters. The technical term is “comorbidity.” For example, children with Type 1 diabetes are 10 times more likely to test for the celiac antibodies than the general population. Other comorbidities for celiac have been found with Lupus, RA, Fybromyalgia/IBS, among others. Understanding and identifying these comorbidities will hopefully lead to more impactful treatments for patients.

Historically, the celiac community (patients, clinicians, caregivers, researchers) has had difficulty getting the attention of lawmakers and regulators in Washington, D.C. who control so much of the American health care agenda. The same can be argued for many of the disease communities in the autoimmune sector. The goal of the American Autoimmune Related Disease Association (of which CDF is a member) is to organize the autoimmune disease advocate groups around common goals. For example, one of the primary concerns discussed at the summit was the limited knowledge among physicians about autoimmune disorders. This lack of knowledge too often results in missed or delayed diagnosis, directly impacting the health and quality of life of the patient. Wherever we can agree on common strategies to improve healthcare provider and healthcare consumer awareness about autoimmune diseases, the better our opportunity to have real impact.

On April 15, 2015, Marilyn Geller, together with Dr. Edwin Liu, MD, Director at the Colorado Center for Celiac Disease, will visit Washington, D.C. once again to present on celiac disease to Dr. Susan Mayne, Director of the Center for Food Safety and Applied Nutrition, on behalf of the patient community. If we are to achieve success in advancing research and developing therapies for celiac disease, CDF and our allies must be a constant and forceful presence in Washington, D.C. With your ongoing support and commitment to our mission, we are able to increase awareness and education of celiac disease within the medical, research, and legislative communities.

]]>https://celiac.org/blog/2015/04/09/celiac-disease-foundation-attends-state-autoimmune-disease-national-summit/feed/0CDF Funds FDA GREAT3 Workshop in Washington, D.C.https://celiac.org/blog/2015/04/02/cdf-attends-fda-great3-workshop-washington-d-c/
https://celiac.org/blog/2015/04/02/cdf-attends-fda-great3-workshop-washington-d-c/#commentsThu, 02 Apr 2015 17:59:27 +0000http://celiac.org/?p=15428On March 30-31st, 2015, Celiac Disease Foundation Chief Executive Officer, Marilyn G. Geller, attended the FDA Public Workshop on Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics (GREAT3) near Washington, D.C. This landmark conference addressed endpoints and outcome measures for trials for products intended to treat celiac disease and Irritable Bowel Disease. The second day of this meeting focused on testimony from leading experts (including a number of members of CDF’s Medical Advisory Board) to establish endpoints and benchmarks to assess potential treatments for celiac disease emerging from research. Marilyn is proud to sit on the GREAT3 steering committee. CDF Founder, Elaine Monarch, has called this FDA meeting the most important federal meeting on celiac disease in more than 20 years. This workshop indicates that great strides have been made in the recognition of celiac disease as a serious autoimmune disorder with broad implications for patients, caregivers, and society. In this conference, the FDA also acknowledged the central role that disease advocacy organizations, such as Celiac Disease Foundation, can play in assessing disease impact and in educating health care professionals and the public on disease symptoms and possible implications.

GREAT3 panelists, including researchers, clinicians, and FDA representatives, largely concurred that the gluten-free diet can no longer be the only treatment for the disease, and that alternatives are needed. Dr. Alessio Fasano, CDF Medical Advisory Board Member, explained that the gluten-free diet is not the 100% effective treatment that we expected it to be, and declared that a celiac therapeutic was needed to compliment the gluten-free diet. Dr. Joseph Murray, also a CDF Medical Advisory Board Member, argued that therapies that replace the gluten-free diet for celiac disease are needed. Beyond these statements, the following points were made:

Celiac disease is one of the few diseases where treatment is exclusively the burden of the patient and their caregivers.

Celiac disease is among the best-understood and well-documented auto-immune diseases, yet there are still no approved therapies beyond the gluten-free diet.

More than half of celiac patients report dissatisfaction with the gluten-free diet. A large percentage refuse strict adherence to the diet.

Children in particular face exceptional burdens adhering to the gluten-free diet, including, limited appreciation of the risk/reward, peer pressure, and eating away from home.

Asymptomatic celiac patients also struggle to adhere to a strict gluten-free diet despite the potential for long-term damage from continued gluten exposure.

The gluten-free diet can have negative side effects for some patients, including bloating and weight gain.

70% of patients are accidentally exposed to gluten while on the gluten-free diet.

A significant part of the day was spent understanding from the FDA the burdens of proof that drug makers had to meet at various stages along the therapeutic pipeline to have celiac therapies approved. Other points discussed included: the low levels of diagnosis, who are potential targets for therapy and clinical trials within the celiac community, what precisely the focus should be of the initial round of therapies (i.e., improving quality of life, symptom relief, villi healing, and disease vaccine), and the psychological impacts of celiac disease on patients and caregivers.

There are currently five therapies in the pipeline that hope to make living with celiac disease less of a burden. The mere fact that GREAT3 was convened by the FDA and so well attended means there is progress being made. The presence of pharmaceutical companies with drugs in the pipeline is tremendous progress. CDF is proud, through your support, to have been a co-funder of this breakthrough event. But we still aren’t there yet. With your ongoing support and participation, Celiac Disease Foundation will continue to make your voices heard in the legislative, medical, and research communities.

GREAT3 Presentations can be accessed here. Transcripts will be published and made available to the public at a later date.

]]>https://celiac.org/blog/2015/04/02/cdf-attends-fda-great3-workshop-washington-d-c/feed/0CDF Joins Autoimmune Research Network (ARNet)https://celiac.org/blog/2015/03/16/cdf-joins-autoimmune-research-registry-network-arnet/
https://celiac.org/blog/2015/03/16/cdf-joins-autoimmune-research-registry-network-arnet/#commentsTue, 17 Mar 2015 06:27:02 +0000http://celiac.org/?p=15257Celiac Disease Foundation is pleased to announce our participation in the Autoimmune Research Network, known as ARNet. ARNet is a network of autoimmune disease advocacy organizations that will foster research into celiac disease and related autoimmune conditions. In consonance with CDF’s Strategic Plan to increase national awareness of the ramifications of undiagnosed celiac disease, the first goal of ARNet is to reduce the time it takes to diagnose participating autoimmune diseases.

Researchers will be able to use ARNet to find out how many people are qualified to participate in their medical research projects. Medical research project participation is strictly voluntary and you may opt out of ARNet participation.

ARNet will be supported by grants from the American Autoimmune Related Diseases Association (AARDA), which will allow CDF to participate at no cost to our organization or to our community. We are grateful to AARDA and the National Coalition of Autoimmune Patient Groups (of which CDF is a member) for providing us with the opportunity to collaborate with other disease advocacy organizations. We believe our understanding of autoimmune conditions such as celiac disease will greatly improve as a result of this effort.

How ARNet Works

CDF will make “blinded” data collected through our website available to researchers through ARNet. “Blinded” data means we remove all identifying information such as your name, address, email, phone and any other data that can directly identify you.

We include information that would help determine whether you would be eligible for participation in research, including your age, gender, years with disease, symptoms, etc.

The information we provide is used by researchers to identify eligible participants for research studies.

If you are eligible for a research study, CDF will be notified through ARNet. We will contact you via email to let you know about the researcher and the research. You may then decide if you would like to participate. The researcher will never contact you directly

If you decide to contact the researcher, that researcher will collect additional data from you to determine if you are eligible to participate in the research. At no point are you required to participate or to provide additional data. Even if you decide to contact the researcher, you can decide not to provide your data.

Throughout this process, CDF never identifies you to researchers and you may always opt out of participation. Please refer to our Privacy Policy for more information.

]]>https://celiac.org/blog/2015/03/16/cdf-joins-autoimmune-research-registry-network-arnet/feed/0CDF Attends Digestive Disease National Coalition Public Policy Forum in Washington DChttps://celiac.org/blog/2015/03/09/cdf-attends-digestive-disease-national-coalition-public-policy-forum-washington-dc/
https://celiac.org/blog/2015/03/09/cdf-attends-digestive-disease-national-coalition-public-policy-forum-washington-dc/#commentsTue, 10 Mar 2015 01:04:42 +0000http://celiac.org/?p=15073On March 1 and 2, 2015, Talia Hassid, Celiac Disease Foundation’s Community Coordinator, attended the Digestive Disease National Coalition Public Policy Forum held in Washington DC. The forum gathers representatives from digestive disease organizations across the U.S. together to arrive at a common agenda to influence health care policy in the United States. Talia met with Members of Congress and other leaders to advocate for increased funding for the National Institutes of Health (NIH), and more specifically, for NIH’s National Institute of Diabetes and Digestive and Kidney Diseases. She also made our case for additional funding for the Food and Drug Administration. Increased federal funding for both therapeutic research and healthcare provider and consumer education is a critical component in our national campaign to address the abysmal diagnosis rate of celiac disease. For example, the FDA is hosting a landmark conference on March 30th, 2015 entitled Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics (GREAT3). GREAT3 will seek testimony to inform endpoints and outcome measures for clinical trials for products intended to treat adult and/or pediatric celiac disease and inflammatory bowel disease. A number of CDF Medical Advisory Board members will be testifying.

For far too long, advocates for celiac disease research and education have lacked a strong voice among federal health policy makers in Washington. As a result, celiac disease is well down the federal priority list, even in comparison to other autoimmune and gastrointestinal diseases. Last year, after a long struggle, we, together with our coalition partners, were able to secure federal standards for gluten-free labeling on food. If we are to achieve the same success in lowering the number of undiagnosed and improving the quality of life for those living with celiac, CDF and our allies must be a constant and forceful presence in Washington. This is precisely why in March 2015 alone, CDF representatives will be in DC for three separate opportunities to make our case for more federal support. In addition to DDNC and GREAT3, CDF will also be represented at The State of Autoimmune Disease Summit. This is unprecedented in our 25-year history. The time, however, to make ourselves heard is now.

About the Digestive Disease National Coalition

The Digestive Disease National Coalition is the leading public policy advocacy organization in our nation’s capital for persons affected with digestive diseases. This annual event brings together patients, health care providers, industry representatives, lawmakers, and their legislative staff for two days of educational programs, legislative updates, and advocacy training. The objective is to brief participants from around the country on federal health care legislation and policy, and provide the opportunity to educate Members of Congress on issues of concern to the digestive disease community.

]]>https://celiac.org/blog/2015/03/09/cdf-attends-digestive-disease-national-coalition-public-policy-forum-washington-dc/feed/0Your Invitation to The State of Autoimmune Disease: A National Summithttps://celiac.org/blog/2015/02/28/autoimmune-summit/
https://celiac.org/blog/2015/02/28/autoimmune-summit/#commentsSun, 01 Mar 2015 02:12:09 +0000http://celiac.org/?p=14903The State of Autoimmune Disease: A National Summit

In honor of National Autoimmune Disease Awareness Month, the American Autoimmune Related Diseases Association (AARDA) and the National Coalition of Autoimmune Patient Groups (NCAPG) of which Celiac Disease Foundation is a member, cordially invite you to The State of Autoimmune Disease: A National Summit at the National Press Club, Holeman Lounge, in Washington, DC on Monday, March 23, 2015 from 9:00 a.m. to 4:00 p.m.

The summit will bring together leading experts in research, environment, advocacy and patient issues to explore the most current trends in autoimmune disease diagnosis, treatments and therapies. Panels will include:

Autoimmune Disease Research: A View from Academia, Government and the Private Sectors

Autoimmune Disease and Fatigue: What’s the Connection?

Autoimmunity and the Environment

Top Autoimmune Advocacy Issues for 2015

Patient Perspective: Getting an Autoimmune Disease Diagnosis

Over lunch, we will hear from acclaimed American writer, poet and editor Meghan O’Rourke who so beautifully wrote about her personal story with autoimmune disease in The New Yorker. A limited number of tickets are available on a first-come, first-serve basis.

Email info@celiac.org to let us know you if you will be joining CEO Marilyn Geller in attending.

Specialty Medicines: Access and Safety Congressional Briefing

On Tuesday, March 24, 2015, you are invited to attend the Congressional Briefing, “Specialty Medicines: Access and Safety”. The briefing will be held in the Cannon House Office Building, Room 122, 27 Independence Avenue SE in Washington, DC, from 9:00 a.m. to 11:00 a.m. It will bring together leading experts, researchers, legislators and patients to discuss top autoimmune disease advocacy issues, including:

Access to Specialty Medicines

Biologicals and Biosimilars

A light breakfast will be served. A limited number of tickets are available on a first-come, first-serve basis. Please RSVP by Monday, March 16 to:

Email info@celiac.org to let us know if you will be joining CEO Marilyn Geller in attending.

Be Heard – Submit a Patient Testimonial Video

Would you like to submit a patient testimonial video to be played at the National Summit? If so, please send to info@celiac.org no later than Tuesday, March 3rd. CDF will load the best videos to our YouTube site for review and selection by AARDA.

Videos can be shot with smartphone, iPad, etc.

Length of videos can range between 30 – 90 seconds MAX.

Identify yourself by name, the disease(s) you suffer from and a short vignette about your struggles with diagnosis and/or fatigue.

Have questions? Please contact us at 818.716.1513, x105 or at info@celiac.org